Miracles...

Sunday, May 20, 2012

We realize that we have not been quite so diligent in keeping up with things on this blog, but we hope you don't stop checking back from time to time to see how Stephen is doing and send him your thoughts and prayers.

Here are a few pictures from the last few weeks of physical therapy at Neuroworx.

This first one is of Stephen trying out a Quad Rugby chair. Jan, the director of Neuroworx works with the Quad Rugby team and brought in this chair for Stephen to check out and see if he likes. She has encouraged him to get involved with Quad Rugby and even work with the team. Sounds fun, huh?

This picture is from Pool day this week. Stephen is down to one therapist with him in the pool. He has had two in order to help support him. It's kind of hard to tell what's going on in this picture. There is a hammock kind of swing that he is sitting on and the jets are blowing from behind him. He was able to sit there on his own for a few minutes with the jets blowing from behind and not fall forward. Pres. Packer said in a conference talk, "every quarter of an inch of improvement is worth striving for." This is improvement!

Sunday, May 13, 2012

It's Mother's Day today and while it is good and appropriate to honor all
good and "virtuous woman" whose "price is far above rubies"
may I pay public tribute to Stephen's mother. There may be some who follow this
blog who have some idea of the love, the true love, exerted by Genny for her
children. She has loved unconditionally, she has given herself, not just of herself,
but has given herself, she has cared for, nurtured, and loved Stephen and our
family in a way that can only be understood by comparing it to the love of the
Savior. She has been heroic in her efforts, tireless in her care, charitable in
her example and always, always lovely, virtuous, and beautiful in her manner
and spirit.

While I am aware that this is a public blog and I try to keep some things
(probably most things) private I would like to share one thing as it relates to
Mother's and in this case, specifically to Genny. When we were in the hospital
in Utah our family gathered for a blessing for Stephen. Genny and I had been
fasting and had been in the Provo Temple earlier in the day and had met our
family to give a blessing to Stephen. Genny was inspired in her counsel to me
in the temple that allowed me to speak by the spirit and to pronounce the will
of the Lord upon Stephen. During the course of the blessing an image of Genny
sitting in the corner of the room with her head bowed came to my mind and as
near as I can remember these words were pronounced, "Stephen, may you
always remember that this blessing upon you is yours because of the faith,
goodness, virtue, and beauty of your mother."

Franklin D. Richards said, "Now, I ask you: Is it possible that we have
the holy priesthood and our wives have none of it? Do you not see, by what I
have read, that Joseph desired to confer these keys of power upon them in
connection with their husbands? I hold that a faithful wife has certain
blessings, powers and rights, and is made partaker of certain gifts and
blessings and promises with her husband, which she cannot be deprived of,
except by transgression of the holy order of God. They shall enjoy what God
said they should. And these signs shall follow them if they believe."

Furthermore, we know, "That the rights of the priesthood are
inseparable connected with the powers of heaven, and that the powers of heaven
cannot be controlled nor handled only upon the principles of
righteousness....No power or influence can or ought to be maintained by virtue
of the priesthood, only by persuasion, by long-suffering, by gentleness and
meekness, and by love unfeigned; By kindness, and pure knowledge...let virtue
garnish thy thoughts unceasingly; then shall thy confidence wax strong in the
presence of God; and the doctrine of the priesthood shall distill upon thy soul
as the dews from heaven."

Surely the principles that govern the power of the priesthood are not
limited to men. Righteous women are connected to the power of the priesthood by
virtue of their goodness and beauty that allow for the spirit to lead them,
guide them, and bless them. In our case, you can see how Stephen's beautiful
mother has not only cared for him but has enabled the power of the priesthood
to rest upon him. And in the coming day, we will see, "..because of the
faith, goodness, virtue, and beauty of your mother" that the power of the
priesthood will be made manifest for all to see.

How we love you and honor you Genny, our dear mother, today and every day.

Tuesday, May 1, 2012

We have been in Utah for one month! So much has happened, that it is hard to believe it has only been a month. We are grateful to be in Riverton, closer to Neuroworx and Provo. Last week Spence and I traded places. Spence took a week of well-deserved vacation from work and Mr. Mom duties so he could come up and see go to therapy with Stephen. I went home to catch up with stuff at home and spend time with the kids. It was a good switch/break for both of us. We both feel torn between the being in Utah and home, but the best we can do for now is divide and conquer. It is a temporary solution, until we can see a path ahead. Dan and Stephen hung out for the day while I drove to the airport and flew home, meeting Spence and the kids at the PHX airport. We hung out for a few minutes before Spence had to catch his flight to SLC. It was a risky proposition, because we were trusting the flights to be on time, but it worked out according to plan.

In the meantime, Dan and Stephen had a great time at the Wheelchair Jazz celebrity basketball game that night at Jordan High School. It is an annual charity basketball game featuring the wheelchair jazz team and local celebrities in wheelchairs, like Sean Bradley (whose knees were in his chest). The highlight was Dan shooting and missing a freethrow in a wheelchair and then dancing on the court with Alex Boye singing some kind of hip hop song. We are still hoping for a video or photos, cause we all know Dan can dance. I'm bummed I missed it, but so glad to be home with my kids and do regular stuff. We had a great week and I loved being home with the kids. The next Saturday we had the same pathetic switch, except this time Spencer's flight was 15 minutes late. I met him at the gate in Phoenx and he walked me to my gate. When this is all over I'm looking forward to some good time together.

Stephen had a good week with Spence keeping him company, talking sports and not fighting over tv channels. It was Spencer's first chance to go to Neuroworx with Stephen. Plus they went to a seminar about research and future treatments. Plus Wednesday was Stephen's first day of class at BYU in Provo. He got readmitted and registered (for just one class...Classic Civ) barely in time, but it all worked out pretty smoothly. We met with the Disability office and they are very helpful getting all the accommodations arranged with the professors. They contacted the other students in the class and arranged for a notetaker to share her daily notes. He meets with the professor fifteen minutes before class to take the daily quiz orally. Plus he can take his tests with Dragon Speak or a scribe. He has access to all the textbooks digitally. They will keep his scholarship with a minimum of 9 credit hours at least, possibly less. He can have priority registration too. But the best part is...we can park anywhere!!! So this will be a good test run to figure it all out. There will be a few inconveniences, but we are encouraged. Stephen has enjoyed his class and feels good back on campus. Plus, the reading and homework is keeping him busy. So now he can register for Summer and Fall, when he figures out what he wants to study. Oh the dilemma of every college student. At least somethings haven't changed.

We have some little problem-solving things to figure out, like how to hit the elevator buttons and the handicap door signs with small buttons. We could use a few gizmos to attach to the chair to hold his ipad, phone, and a better straw to get a drink. Basically we need to think like Jimmy Neutron. We have an appointment with an OT on Thursday, so maybe she can help us out. Maybe we could even get a writing splint. The problem then is switching from the ipad stylus to a pen/pencil and then to the eating splint. There is a way...we just need to figure it out.

So...that is progress of one kind. Still praying, hoping, and waiting for progress of another.